The Patient Voice : An analysis of free-text responses from the 2023 National Kidney Patient Experience Survey (Kidney PREM)

Abstract

The Kidney Patient Reported Experience Measure (Kidney PREM) is facilitated annually by the UK Kidney Association and Kidney Care UK. The Kidney PREM has 39 questions covering 13 themes, and in 2023 was available online only. The end of the survey has a free-text question asking participants to comment on any aspect of their care. “If there is any other aspect of your experience of kidney care that you would like to comment on that has not already been covered, please tell us below”. In 2023, 11,647 people with kidney disease took part, with 4,202 (36% of responses) providing a further comment on their care. The number of individuals responding to Kidney PREM increased slightly from 2022, with the number of respondents leaving a comment increasing by 14.5% in part undoubtedly due to the nature of Kidney PREM being online only. This increase in the number of comments improves understanding of patient experience of kidney care and helps to explain the reasons for changes in theme scores in the national report from the previous year. Additionally, 94.1% of responders gave consent for their comments to be passed back to their kidney centre meaning they can be used to help inform quality improvement. Generally, the profile of responders who left a free-text comment matched that of the national Kidney PREM 2023; however, there was a higher representation in the comments from individuals of a Black ethnic heritage (+1.3%). Compared to Kidney PREM 2022, the profile of responders remained consistent. Comments were mapped to the 13 themes of experience that make up the Kidney PREM survey, as the free-text responses align with them well. How the Kidney Team Treats You received the highest number of related comments (2,283), with 66% of comments under this theme being positive. Comments under this theme focused on positive views about staff, thanking them for their care and dedication, as well as mentioning role-specific staff members positively. Comments containing examples of good experiences of care featured highly. Access to the Kidney Team was the second most common theme (721 comments) to emerge from the comments and was predominantly negative (69%). Respondents commented on wanting to see a consultant more frequently, as well as having appointments scheduled with the dietician, social worker and psychologist. Additionally, respondents mentioned the need for better access to the kidney team outside of dialysis sessions. Environment (649 comments), Scheduling and Planning (546 comments), and Transport (525 comments) received comments from individuals wanting better parking facilities, food to be offered during dialysis sessions and for appointments to be more frequent and better organised with no last-minute cancellations. Appointments via the telephone had mixed reviews with some finding them more convenient and a better use of time, whilst others feel they are less person-centred. Waiting times for transport following dialysis sessions continues to be an issue with individuals having to wait longer than an hour on most occasions. Aspects of care such as Needling, Privacy and Dignity, and Sharing Decisions received fewer comments but should still be considered as important areas of care for improvement. Individuals receiving treatment would like more opportunities to discuss what they would like from their care, needling to be performed by competent members of staff, so as to be less painful and for conversations with consultants and nurses to be conducted in private, with those who identify as female having a separate space to dialyse to maintain dignity. Emerging Themes (494 comments) contain comments which do not align with the Kidney PREM themes, including medication and prescriptions, information about diagnosis or specific treatment issues, and ‘dialysis while on holiday’. This year, in alignment with the Kidney PREM survey, two new themes arose from the free-text responses, Overall Experience and Additional Questions. There were 255 comments (98% positive) about overall experience of care, and 353 comments about additional questions that were asked within the Kidney PREM survey such as whether individuals use Patient Knows Best, language barriers and feedback from last year’s Kidney PREM report. Respondents’ characteristics were also reflected in comments: for instance, younger individuals tended to focus on the Environment and older individuals on How the Kidney Team Treats You and Access to the Kidney Team. Those receiving haemodialysis in-centre or at a satellite unit were more likely to comment about the Environment and Transport, with those not receiving Kidney Replacement Therapy (KRT) or who have received a functioning transplant focused on Scheduling and Planning, and Access to the Kidney Team.